UK government: we demand a say in how our NHS health data is used
The UK government is preparing to hand a massive new £480 million contract to run the NHS ‘Federated Data Platform’ to a shady US spy-tech firm called Palantir. In a last-minute change, the government seem to be saying that patients have no say over how their health data is used in this giant database – and that they won’t honour patient opt-outs, even if the data is used for reasons beyond your direct care. Sign the petition and demand a say.
To UK Health Secretary Victoria Atkins:
We demand a say in how our health data is used, especially in a system run by US corporation Palantir. We want our data to be used to help the NHS. We also want our privacy protected, and we don’t want our data to be commercially exploited without our consent. We call on you to:
- Respect the opt-outs: Give patients a meaningful choice in the Federated Data Platform – if you use the system beyond direct care, patient choice has to be respected.
- Reform patient choice: Overhaul the existing systems for patient consent to give patients real choice about how our data is used, even when it has been “pseudonymised”.
- Keep it safe: protect patient data from commercial exploitation and ensure our health data is not shared with other government bodies, for example the Home Office and HMRC.
The UK government is preparing to hand a massive new £480 million contract to run the NHS ‘Federated Data Platform’ — the biggest IT contract in NHS history — to a shady US spy-tech firm called Palantir.
Now, in a last-minute change, the government seem to be saying that patients have no say over how their health data is used in this giant database – and that they won’t honour patient opt-outs, even if the data is used for reasons beyond your direct care.
This issue is bigger than Palantir – it’s about your right to choose how your health data is used as this vast new system grows. The FDP, despite its £480m price tag, is starting with just a few minor uses – like direct care. That’s a good thing: we all need the NHS to share data better for our care.
But direct care isn’t all the FDP is for – and it may be just the tip of the iceberg of the new Palantir system. Government have also said once the FDP is built, it will grow: it is the foundation for a new way of managing health data in the NHS.
We think you have a right to a say over how the data is used. Anything beyond our direct care – like planning, or drug research – is a ‘secondary’ use. We think you have a legal right to opt out.
This is a flip-flop from the government’s earlier position. Over the summer they promised to reform the system of legal opt-outs to give you more control. Now they seem to have hit the brakes on that plan and suggest you have no say at all.
That’s wrong. Government should reform the opt-out, not bin it. Please join the fight and sign the petition.